MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Bubbles's picture
Replies 3
Last reply 1/29/2015 - 12:31am
Replies by: Bubbles, casagrayson

To be precise:  https://clinicaltrials.gov/ct2/show/NCT02301611?term=Elios&rank=1

I was diagnosed with melanoma in 2003.  I progressed to Stage IV with brain and lung mets in 2010.  I was lucky enough to participate in a Nivo trial in 2010.  I remain NED.  I am for anything...and I mean ANYTHING!!!!!!... that will help patients with melanoma.  I think most of you know that...and me...very well.  However, I am equally passionate about those who would use melanoma...and the fear that such a diagnosis creates...to make money, reputation, whatever craziness they have in their own heads...at the expense of patients and families that are suffering.  When Ms. Patten first promoted her grand melanoma treatment...I thought: What???  This is weird.  I've been living in melanoma world a long time and this trial/treatment has no rep what-so-ever with Ribas, Sosman, Flaherty, Weber, Wolchok, Sznol, Pavlick, etc.  BUT....let me check....

Here is what my husband found after many hours of research.  We both present it here:

Dear Tim and the rest of you depending on this board…

 I am writing to alert you to a possible scam unfolding on the MRF site. Twice last week, and twice today, a  poster using the name “Jane Patten” and “anonymous” proffered a clinical trial for melanoma using autologous vaccine with dendritic cells prepared via a technique patented by a Dr. Wagner who runs a clinic in the Cayman Islands. The medical director of the Perseus Clinic is Dr. George Peoples who is also the CEO of Cancer Insight, LLC. Cancer Insight is sponsoring the clinical trials in the US.  However, some of the Phase 1 and Phase 2 data used for their application was derived from patients in the Cayman Islands. Perseus pays patients $10,000.00 to participate in these trials. The data available for the Phase 1 trial from the Perseus website is garbled and looks as though the response rate is significantly less than that achieved by other available options like Yervoy, anti-pd1 and even IL2. There are only 23 evaluable patients in the cohort. Of these, 4 were NED at the start of the trial. However, since all 4 NED patients survived for the length of the study, when they are averaged in with the other patients, they skew the survival figures.  According to Perseus data, with patients presenting initially as Stage II-IV, the progression free survival was only 12.4% at 30 months. This is no better than what is historically reported for Stage IV melanoma patients generally.  The published data in the paper:  Dendritoma Vaccine for Cancer: A Hopeful Approach.  Wei, Li, Wagner.  Current Cancer Therapy Reviews. 2009.  [Check it!!!  2009, people!!!!!!!!]  touted by the Perseus web site, using their specific vaccine preparation in conjunction with IL2 in their clinical trial, demonstrates a much worse response than other trials with dendritic autologous vaccines to date. The Phase I trial of Stage IV melanoma patients had only 1 complete response and 2 stable disease events out of 10 patients. Length of response is not stated. The Phase II study had a progression free survival of 5.5 months which is less than what is expected for Stage IV melanoma patients with NO TREATMENT!!!!! The progression free survival at 5 years was 2 patients out of 15 (or 13%). The Perseus web site also presents an “infographic” which states that there is “increased life expectancy across the board”. This is illustrated by a “90%  6.5 month survival after treatment, 33% after 5 years and 10% after 12 years”. Nowhere does it indicate the Stage of the patient, other treatments utilized, etc. ALL of the “data” is based on 25 patients with melanoma. No other reputable melanoma oncologist or researcher presents such a vague and misleading face to their care/data. This trial, its proponents, and results are not credible. These posts are an obvious sales pitch. Sadly, this represents a deplorable scam.  Brent Morris, M.D.

Obviously, each of you will have to choose what is best for you and yours.  We have both dedicated a large part of our personal time and effort, with no agenda other than the best possible care and treatment, to melanoma patients (near and far) for many years.  Do what you think is best for you.  But, with the predatory nature of Ms. Patten's posts....we thought it best that you see the data for yourselves.

Wishing you all our best - Celeste and Brent Morris

chaoticallypreciselifeloveandmelanoma.blogspot.com

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JustMeInCA's picture
Replies 2
Last reply 1/28/2015 - 11:52pm
Replies by: JustMeInCA, JoshF

Hi, all --

I posted this a couple days ago but think it got lost in the shuffle, and I'm completely overwhelmed with all the issues over the past few days. Dad was hospitalized after his PET/CT with pneumonia which caused rigors and delirium. He was discharged last night and is back home, but he's still a little confused and having cognitive issues (which were not there previously.) This they are blaming on the infection, as the elderly often exhibit confusion with systemic infections. On top of that, they lost Dad's upper denture while at the hospital, so I'm trying to find a dentist to get that done ASAP, though it seems it will be out-of-pocket. They also want him to do physical therapy, as he came out of the hospital rather shaky and unsteady.

I am also supposed to make a decision about what to do with his melanoma treatment. His PET/CT showed some shrinkage of his smallest tumors after four doses of Keytruda, but the largest ones have grown, most by just a couple mm but some quite a bit more.

For example, his report says, "Representative left lower lobe pulmonary nodule previously measuring 1.9 cm, now measures 2.6 cm ... Representative right middle lobe pulmonary nodule previously measuring 1.7 cm, now measures 2.3 cm ... Representative right upper lobe pulmonary nodule previously measuring 2.9 cm, now measures 3.6 cm"

The new tumor (since starting Keytruda) seems to be growing quickly: "Interval increase in size of hypoattenuating segment 8/4A liver lesion previously measuring 1.8 x 1.5 cm, now measuring up to 3.9 x 3.8 cm with interval increase in FDG avidityInterval from SUV Max of 4.0 to SUV Max of 7.5."

His doctor at UCSF, Adil Daud, feels that it's time to try something else. I asked him about the reports of late responders, and he said that while that can happen, his experience after leading trials of the drug for the past couple years is that people who are going to respond usually do by this point. He has suggested the following options:

1. Switch to Nivo, still a PD-1 but a different chemical, which could trigger a different response;

2. Try Temodar, a chemotherapy pill with very mild side effects but a response rate of only 10-12%;

3. Try two more infusions of Keytruda but at 2-week intervals.

I haven't heard before of people switching from one PD-1 to another, nor do I know anything about Temodar. If anyone has any insight, I would really, really appreciate it. I'm getting to the end of my rope here and really am not able to think clearly enough (or have the time to investigate enough) to feel like I can make a good decision.

Thanks very much!

 

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If you want to chat you can email me @ jennifersneathen21@yahoo.com I can chat with you about anything your going through:) I am bored during the day and wouldn't mind the company!!! Feel free to email me and I can give you my cell # there :) 

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alfreym1's picture
Replies 3
Last reply 1/29/2015 - 12:19am
Replies by: Cynthia C, Prd10, SABKLYN

I was diagnosed with Stage 3a in 2007 while pregnant with my first child. Soon after he was born I underwent 3 surgeries(excision of the mole area, lymph node biopsy and later the complete removal of my lymph nodes because 2 came back positive). I went through 1 month of intensive immuno/chemo therapy followed by 11 months of interferon treatment.  I am glad to say that I've been clear since 2009 but I still suffer from anxiety. Lately, my anxiety has been worse because I am pregnant with my second child and I'm concerned that the hormonal changes may cause recurrence.

Occasionally within the past 3 to 4 years I have experienced unusual symptoms that somewhat resemble MS symptoms. I have seen 2 different neurologist during the episodes but they've both told me I do not have MS. Although they couldn't tell me exactly what is going on with me, they did mentioned it could be stress/anxiety induced. The most recent neurologist I saw mentioned it could be long-term effects from the treatment but she also brought up that typically if there is any nerve damage from treatment, it is not episodal like my symptoms.

Has anyone else experienced this!? Any feedback will be much appreciated.

 

Maggie

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So my daughter who has the large liver mass, whom had liver embolization and four rounds of YERVOY just found out she is indeed Braf positive. Does YERVOY respond better if Braf? She has scans tomorrow and I'm praying the YERVOY is working. I'm guessing being Braf positive is better? Her LDH is way down from 8000 to now normal ranges. The wait until results next wed are torture. 

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Kmiles's picture
Replies 1
Last reply 1/28/2015 - 9:19am
Replies by: Janner

Ok, so October I recieved the call melanoma, November WLE and SNB bilateral results positive on both sides (right side 3mm left side 1mm) December bilateral lymph node dissection but finally we got a negative on the 53 lymph nodes removed.  

Three month regular dermatologist appointment yesterday and she feels like she has found another spot.  She did the biopsy and now we wait again.  

Did I mention I'm not good at waiting!  But these last three months have certainly been a bunch of hurry up and wait.  So if this comes back will it change my 3a stage? Will it change the treatment?  

in my heart I think this is not a melanoma.  My original one could have been holding a sign that read in flashing neon lights that read "hello, I'm a melanoma!"  This one looked very normal to me.  I don't think I'm wishful thinking here but we will know in a few days.  

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Jubes's picture
Replies 8
Last reply 1/29/2015 - 2:35am

Hi everyone

i had some scans today that showed the melanoma in my lung has shrunk from 7.9 cm to 3 cm. I also have 4 or 5 nodes in my chest with melanoma and they are almost back to normal size. I have had 9 infusions of keytruda and as my cough has reduced and I am feeling well, this was the first scan since I started on keytruda.

i just want to thank everybody on this site for their invalulable advice and support, especially artie and celeste, but really everybody. Thank you from the bottom of my heart and I sincerely hope that you all have positive outcomes like this and find the right team of doctors for your needs, as the research seems to be moving fast in the right direction.

Thanks again

jubes(aka Anne-Louise) 

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/29/2015 - 1:00am
Replies by: Sherman, Gene_S, JoshF, Bubbles, Anonymous, Jubes, Paladium

My grandfather was recently diagnosed with Metastatic Melanoma. A brain tumor was found in the cerebellum and CT showed multiple nodules and a large mass in my lungs. After lung biopsy I was diagnosed with Metastatic Melanoma. I found a melanoma specialist for him who immediatly sent us to a neuorosurgeon. The next day my grandfather went through a 6 hour brain surgery to remove the tumor. Everything went really well!! I was so extremly nervous for my 83 year old grandfather to go through something as tramatic. Believe it or not he was walking the very next day. Now that the brain tumor is removed he has to have 5 treatments of radiation to the site. We were originally told he only needed one treatment of radiation but the Dr thought it was safer for him to break it up into 5 because of the incision size and his age. That started today. But the one I am really really worried about is the Yervoy. He starts that tomorrow and is also getting some pills (forgot the name) that he has to take at home before bed. The Yervoy is only once every three weeks. After reading up on it I am so very nervous for him to take something so risky with so so many side effects. I dont think I have read a single good thing about it. Has anyone had any experience with this good or bad. It will be very helpful to have some extra insite or to get a heads up of what to look out for. Although my grandfather is 83 he is a very young and active 83. This is why we are trying to fight this. But if the quality of what he has left of life is bad then I dont know if its really worth it. 
 

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Hello, 

I am here to help my dear friend of 40+ years... I work in the brain cancer field and she reached out to me for help with her dad who was dx with Spindle Cell Melanoma in December.  Her dad is 79 and otherwise healthy.  He presented with a bump on the top of his head... No lesion, no mole... a bump from the inside of his skull (very tip top of his head).  He noticed it back in May and had his dermatologist check it again in September... Nada... No biopsy until December.  

Breslow Depth of 4.4mm, Clark Level IV, mitotic rate of 3. 

The confusion is that the oncologist suggests Wide excision with Sentinel lymph node biopsy, but the head/neck surgeon says no to the SLNB... 

I have been reading up on Desmoplastic  Melanoma vs Spindle Cell Melanoma. Not sure I fully grasp the differences yet... trying to play catch up here prior to his Surgery on Monday for a very wide excision and difficult fix job... Either will need a skin graft or a Free Flap (live tissue transfer from his left arm). 

I would love to talk to anyone with experience here... Reading up on this is confusing. 

 

Thank you!

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vince1962's picture
Replies 7
Last reply 1/28/2015 - 3:52pm

Final Diagnosis [Microsopic]:  Right axilla, biopsy- A.Metastatic melignant neoplasm involving lymph node, immunohistochemically consistent with metastatic melanoma. An infiltrate of malignant cells that show strong positivity for S100 and SOX-10 is identified.  Can someone please help me with this as far as what stage this might be! I have no clue what all this means.

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MindyD's picture
Replies 4
Last reply 1/28/2015 - 9:56pm
Replies by: BrianP, MindyD, washoegal, Linny

Has anyone developed this condition after axillary (arm pit) lymph node surgery?  I don't see my surgeon for my next follow up until next Tuesday, and have not confirmed that I have it... But based on what I've read, it sure does look and feel like exactly that.  2 visible "tendon like" cords that run from the incision down the back & front of my arm, into the elbow.  It's extremely tight and painful when raising my arm or stretching to reach something. My range of motion is more limited now than the day after surgery. Any suggestions for pain relief?  

- Mindy

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Anonymous's picture
Replies 19
Last reply 1/28/2015 - 9:13pm

Greetings. 

My wife was diagnosed in early October with melanoma after noticing a new mole on upper back in August.  She had wide excision and 2 sentinels removed with melanoma 1mm and 2mm.  Axillary lymph nodes (full LND) removed for remaining nodes a few weeks later.  Stage IIIB with nodular melanoma and 3.6mm depth.

We have been through alot emotionally these past few months needless to say.

We met with Oncologist at MSK right after the full LND who specializes in melanoma and on schedule now for CT scans and MRI on a regular scheudle.  They don't suggest interferon.  And they didnt suggest any clinical trials available which sort of surprised me given its a hospital that specializes in this, so the other option is "watch and wait". 

This is going to be a difficult journey so any words of advice would be helpful.

 

Thanks,

Michael1212

 

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/27/2015 - 2:20pm
Replies by: Anonymous, Janner

I am scheduled for a re-excision of dysplastic nevus.  However, I received my path report and would like your input.  Diagnosis:  Compound melanocytic nevus with architechtural and moderate cytologic atypia.  Conservative re-excision is advised.  There is a broad proliferation of enlarged melanocytes arranged as solitary units and as nests within the epidermis, predominantly at the dermo-epidermal junction and within the papillary dermis where there is fibroplasia, telangiectases and a a patchy inflammatory cell infiltrate with melanophages.  There is moderate cytological atypia of melanocytes within the intraepidermal component.

Can you tell me what this means and if re-excision is necessary?

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Mom2Addy's picture
Replies 4
Last reply 1/28/2015 - 12:07pm

Our journey began in 2009 with a melanoma removed from my husband's back, followed by surgery to remove 2 lymph nodes under his left arm.  Three years later, the CT scan showed that same area under his left arm lit up so more surgery to remove another 8-10 lymph nodes, followed this time by 20 treatments with Interferon.  Fast forward to 2014 with a clean scan (one questionable area marked to watch) in June to December, where the CT showed two spots in his brain, one nodule on his back, two on his leg, one in the right bicep and one on the chest wall.  They removed one nodule and it came back positive for melanoma.  Diagnosis, stage IV Metatastic Melanoma.  We were shocked beyond belief, especially because he hadn't felt sick and the nodules didn't cause him any pain.  In fact we were consistently told they were probably just fat pockets but having been a melanoma patient, knew we had to get them tested.  Is feeling perfectly fine, no pain and no effects of the brain lesions common?  Do others feel perfectly normal and yet get hit with such a devastating diagnosis? 

Just to close out, he did have steretactic radiation on his brain the first week of January and surgery last Friday to remove the nodules in his arm, leg and chest.  We are now awaiting the start of IPI, which has been delayed due to the heavy doses of dexamethasone (steroid) to treat the side effects of the SRS.  Again, other than expect side effects of the SRS and surgery, he still doesn't feel sick.  Just difficult getting our heads around this!

Thank you.

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lsmith - MRF's picture
Replies 1
Last reply 1/28/2015 - 8:19am
Replies by: Maureen038

Hi all,

The MRF plans to host several Twitter chats in 2015 and we'd like to hear from you! What topics would you like to see our Twitter chats address? In 2014, we covered clinical trials, the importance of early detection and tips for coping with the stress of the holidays. Please post your suggests here on MPIP or feel free to email me at LSmithDyer@melanoma.org.

Thank you!

- Lauren, MRF

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